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Objectives: Adolescents with type 1 diabetes (T1D) and their caregivers endorse high diabetes distress (DD). Limited studies have documented the impact of DD on Black youth. The aims of the present study were to (1) describe DD among a sample of Black adolescents with T1D and their caregivers, (2) compare their DD levels with published normative samples, and (3) determine how DD relates to glycemic outcomes, diabetes self-management, parental monitoring of diabetes, and youth depressive symptoms., Methods: Baseline data from a multicenter clinical trial were used. Participants (N = 155) were recruited from 7 Midwestern pediatric diabetes clinics. Hemoglobin A1c (HbA1c) and measures of DD, parental monitoring of diabetes care, youth depression and diabetes management behaviors were obtained. The sample was split into (1) adolescents (ages 13-14; N = 95) and (2) preadolescents (ages 10-12; N = 60). Analyses utilized Cohen's d effect sizes, Pearson correlations, t-tests, and multiple regression., Results: DD levels in youth and caregivers were high, with 45%-58% exceeding either clinical cutoff scores or validation study sample means. Higher DD in youth and caregivers was associated with higher HbA1c, lower diabetes self-management, and elevated depressive symptoms, but not with parental monitoring of diabetes management., Conclusions: Screening for DD in Black youth with T1D and caregivers is recommended, as are culturally informed interventions that can reduce distress levels and lead to improved health outcomes. More research is needed on how systemic inequities contribute to higher DD in Black youth and the strategies/policy changes needed to reduce these inequities., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objective: Youth with chronic illness are at higher risk for psychosocial difficulties, leading to a call for screening via patient-reported outcomes (PROs). The purpose of the current review is to summarize PRO implementation in pediatric medical specialty settings. A literature review of PRO implementation in these settings, conceptual issues, value and approach, legal and ethical concerns, as well as a case example of PROA in type 1 diabetes are presented., Methods: A systematic review was conducted to identify relevant articles published since the most recent Journal of Pediatric Psychology Special Issue on Evidence-Based Assessment in Pediatric Psychology (2008)., Results: Thirty-two articles were identified and reviewed. The majority of studies reported that PROA was feasible, did not disrupt clinic flow, identified psychosocial issues warranting intervention, and was acceptable to families and providers. Response to elevated scores and impact on behavioral health referrals varied., Conclusion: While many evidenced-based assessment measures are well-validated within pediatric chronic illness groups, the literature regarding implementation of PROs is still emerging. Research findings are promising, with PROs being feasible, acceptable, and leading to increased discussion of psychosocial issues when integrated into pediatric medical settings. Additional research is needed to evaluate the longitudinal impact of PROs and the optimal manner of responding to assessment data, particularly when clinically-elevated. Ultimately, identifying psychosocial issues in pediatric medical settings can promote optimal health and well-being of youth with chronic illness and their families., (© The Author(s) 2019. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objective: Children with type 1 diabetes and their parents face daily self-care demands, leading to diabetes-specific emotional distress. A standardized measure of diabetes distress can guide clinical care and prevent negative outcomes., Methods: This study evaluated the psychometric properties of child- and parent-report measures of the Problem Areas in Diabetes Scale, adapted for children ages 8-12 (PAID-C) and their parents (P-PAID-C). Participants were from 42 diabetes camps in the United States. Children (N = 804; mean age = 10.3 ± 1.1) and parents (N = 968) completed measures of diabetes distress, diabetes-related strengths, and self-care skills. Half of the sample was used for exploratory factor analyses (EFA) with direct oblimin rotation and the other half for confirmatory factor analyses (CFAs)., Results: For the PAID-C, EFA and CFAs supported an 11-item two-factor measure, Cronbach's α = .91, accounting for 54.6% of the variance. For the P-PAID-C, analyses resulted in a 16-item measure, Cronbach's α = .92, accounting for 51.9% of the variance. PAID-C and P-PAID-C scores were positively correlated with HbA1c (rchild = .08, p = .04; rparent = .18, p < .001), and negatively correlated with diabetes-related strengths (rchild = -.38, p < .001, rparent = -.29, p < .001) and parent report of child self-care skills (rparent = -.13, p < .001; rchild = -0.07, p = ns)., Conclusions: Initial psychometrics suggest that the PAID-C and P-PAID-C reliably and validly capture diabetes-specific emotional distress for children and their parents. Associations with glycemic control, self-care, and diabetes strengths demonstrate criterion validity. Both measures have potential applications for routine, clinic-based assessments of diabetes distress and may guide clinical decision-making., (© The Author(s) 2019. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objective: This study adds to the literature on the psychometric properties of the Problem Areas in Diabetes-Teen (PAID-T) and Parent (P-PAID-T) Versions. It also aims to shorten the measures of diabetes-specific distress, determine construct validity, and establish cutoff scores., Methods: Data are from two independent studies (N = 1,265). Adolescent-caregiver dyads completed measures of emotional distress, diabetes strengths, hemoglobin A1c, blood glucose checks, and average blood glucose. Exploratory and confirmatory factor analyses assessed factor structures for each measure. Correlational analyses provided support for concurrent validity. Receiver-operating characteristic curves identified cutoff scores based on clinically meaningful groups identified with latent profile analysis., Results: Analyses supported a 14-item PAID-T and a 15-item P-PAID-T, with preliminary cutoff scores ≥44 and ≥54, respectively. Measures were associated with emotional and health outcomes as hypothesized., Conclusions: The PAID-T and P-PAID-T are valid, reliable, and useful measures of diabetes-specific distress for teenagers with type 1 diabetes and parents of teenagers.

Objective: To examine whether perceived caregiver burden around diabetes management mediated the relationship between caregivers' psychological distress and adolescents' glycemic control., Methods: Across three visits spanning 9 months, caregivers of 147 adolescents with type 1 diabetes completed measures of anxiety and depressive symptoms and a measure of perceived burden specific to diabetes management. Adolescents' glycemic control was also measured., Results: Perceived burden mediated the relationship between caregiver depressive symptoms and adolescents' glycemic control. The overall model was significant, F(10,132) = 5.0, p < .001, R(2) = 0.27. Fifty percent of the relationship was explained by diabetes-specific burden. The relationship between caregiver anxiety symptoms and adolescent glycemic control was partially mediated by diabetes-specific burden, F(10,133) = 5.7, p < .001, R(2) = 0.30, explaining 26% of this relationship., Discussion: A variable linking caregiver psychological distress to adolescent glycemic control is perceived caregiver burden around diabetes management. Implications for clinical practice include targeting caregiver psychological functioning and reducing global and diabetes-specific distress.

Objective: To analyze associations between factor scores for caregiver responsibility for direct and indirect diabetes management tasks with glycemic control and blood glucose monitoring (BGM) frequency., Methods: Two hundred and sixty one adolescents with type 1 diabetes and their caregivers completed the Diabetes Family Responsibility Questionnaire (DFRQ). Data on diabetes management (e.g., BGM frequency) and glycemic control (e.g., A1c values) were obtained., Results: Confirmatory factor analysis of the DFRQ revealed two factors-direct and indirect management tasks. Multivariate analyses demonstrated that adolescent perception of greater responsibility sharing with caregivers on direct management tasks was significantly associated with higher BGM frequency., Conclusions: Adolescents who perceive greater caregiver responsibility, particularly around direct management tasks, engage in better diabetes management. Implications of these findings include designing interventions that encourage and sustain caregiver responsibility through adolescence and make explicit the contribution of caregivers.